In Their Own Words: Autoimmune Diseases

“I can be going along doing pretty well and then suddenly it slams me and I don't know why. It means lying low and resting—when there is pain it is much harder to rest and constant pain wears me down to a point I am ready to cry at the least thing.” –Lee Kaplanian, 61, a Seattle-area promotional marketing consultant who has rheumatoid arthritis

“Daily life is very different, to be candid. For the first year and half after I started treatment I rarely left the house I was so ill. I have a lot less energy than I use to and I am in constant pain. Because of the pain I rarely sleep more than a few hours a night which feeds my lack of energy. I get sick with opportunistic infections often. All of that said I appreciate everything I have so much more than I ever did prior to becoming ill. I made a decision a couple of years ago that this illness will not control my life—nor will it define me.” –Stephanie L. Cion, 32, of New York City, who has chronic inflammatory demyelinating polyneuropathy

“Living with a chronic illness means surrendering control over to the fact that your body may flare up and your plans may have to change. It means that you lose the ability to make promises to follow through on everything you commit too. It also gives you the ability to make discerning choices, however.” –Lisa Copen, 39, of San Diego, who has fibromyalgia and rheumatoid arthritis

“Frankly, having an autoimmune disease is like living a game of roulette. Each and every day, you have no idea what is in store for you. Some days I wake up and I can barely move my body. I can barely sit up in bed or make it to the bathroom to get ready for work. All of my muscles hurt, like I have been hit by a truck! And some days, I feel great. But, those great days are a hidden danger. You feel great, so you think you can do anything—and you tend to overdo it. Then you pay for it the next day.” –Karla Lindula, 28, a communications coordinator in Seattle who has rheumatoid arthritis and Reynaud’s Phenomenon

“I would suggest finding an online forum (didn't have that when I first started in the dark ages) and also the Arthritis Foundation chapter office in their city. It is a way to learn about what form the person has and meet people who understand what the feelings are inside as well as the practical aspects. I will admit, I wasn't keen on doing that—I had enough of dealing with it and didn't want to have that as my only interest in life. But having someone to talk to does help—maybe start with just one person and see how it goes.” –Kaplanian

“Do some research online and then stop reading. It can be overwhelming and depressing and every person’s experience, regardless of their illness, is different. Read just enough to know where to go when you start to experience a symptom that you want more information about.” –Copen

“I would warn them that life will be different moving forward and suggest that they, like myself, need to find something positive to focus their energy on—other than their health—or they will go crazy. I was profoundly depressed after leaving Aetna. It was unbearable for me to sit around every day while in treatment thinking about being sick. I felt like at 29 my life was over.” –Cion

“Definitely get a second opinion. You don’t want to risk the wrong diagnosis—although autoimmune diseases are often similar, there is no reason to take unnecessary medications if you don’t need to. In my case, I was misdiagnosed because the two autoimmune diseases presented similar symptoms and false-positive blood tests…so it’s hard to blame it on the doctors. But, a whole year thinking you have one disease when you really have another is a lot of stress you don’t need, especially when stress worsens autoimmune disease symptoms!” –Lindula